Support for Patients & Families

The mission of our Pediatric Epilepsy Support Group is to meet and address the needs of families who are caring for children afflicted with difficult-to-control epilepsy.

The Pediatric Epilepsy Support Group was established in fall 2003. It is intended as an avenue for families to interact with the members of the support group, as well as with each other.

Caring for a child with refractory epilepsy is not easy and families often find their emotional resources spread thin. It is even more daunting to come to the hospital for evaluation with new and sophisticated diagnostic tests, participate in discussions involving epilepsy surgery as a possible treatment option and undergo procedures such as invasive monitoring of seizures for accurate surgical planning.

The acute void of support beyond the immediate pediatric medical-care-related interactions during their stay in the hospital has been bridged with the help of the Pediatric Epilepsy Support Group. The weekly meetings of the pediatric support group have been a source of strength and comfort for the family members.

The Pediatric Epilepsy Support Group then continues to be a platform for networking interactions beyond the hospital stay and following epilepsy surgery.

This group is a 'work in progress.' Getting our pediatric patients and families through difficult times is our main focus.

Adding a different dimension to complement its role, PESG is pleased to present a biennial venue for pediatric post epilepsy surgery patients. The essential role of these family reunions is to offer a platform to interact with others with whom they share a common thread: epilepsy surgery. Invited speakers offer valuable information pertaining to life after surgery. Alongside nurses and physicians who had been a vital part of their journey, these families celebrate life, hope, strength and determination.

These meetings occur every week at Cleveland Clinic's main campus at Cleveland Clinic Children’s. The meetings are designed to accommodate the parents of our hospitalized patients by providing an opportunity for interactions, exchange of ideas, as well as an environment to express each others' concerns and draw comfort as their child goes through various evaluations, procedures or epilepsy surgery. For several years, scores of families have benefited from the weekly meetings of this support group.

In a collective effort, our team of Volunteer Ambassadors, Cleveland Clinic Child Life Support, Cleveland Clinic Social Work, and members of the medical and neurosurgical staff make themselves available for the parents. These meetings have been universally well-received, as is evident by glowing feedback from families who have attended, and the keen interest expressed by a number of them to become volunteer ambassadors themselves.

Reunion 2010

Reunion 2010

Our 3rd Biennial Reunion was hosted on August 13-14, 2010 and it drew 150 patients and family members from 15 states across the United States. After the kick-off reception hosted on Friday night, parents had the opportunity to meet with other parents whose children underwent epilepsy surgeries. On Saturday, three workshops were offered to all participants on different topics, including medicines and medical issues; rehabilitation; psychosocial/school and learning issues. Break-out sessions provided parents with the chance to get their questions answered by a panel of experts in each workshop.

Our Pediatric Epilepsy Support Group hosted a successful reunion on Aug. 1-2 that drew 280 attendees, including members of 61 families, from throughout the country, as well as from Ireland and South Africa.

This is the second reunion for children who underwent epilepsy surgery at Cleveland Clinic, as well as their families. Physician-led conference sessions were offered to adult participants, and children enjoyed special activities, coordinated by a team of volunteers.

The event culminated with the Rehabilitation Resources Exposition, which showcased the team effort of our rehabilitation specialists at the main campus and Shaker Campus. Breakout sessions, led by volunteer parent ambassadors, provided an opportunity for open conversations among participating family members.

More than 50 national and international families, with about 250 guests in attendance celebrated and shared their experiences of life after epilepsy surgery. The atmosphere brimmed with overwhelming emotions, hugs, laughter and some tears, as we all reminisced about the past. A significant feature of this reunion was the opportunity of the families to attend a symposium with a select group of invited guest faculty, on varied topics of post surgery issues. During the symposium, the patients and siblings enjoyed supervised fun filled activities with our team of volunteers. The success of this reunion was widely acknowledged, and the inspired families parted with hope and optimism. It is likely that such a get-together will become a recurring feature of the Pediatric Epilepsy Support Group!

Limited financial help may be available to assist families in attending the reunion. Each submitted request will be reviewed on a case by case basis. For additional information on the reunion, please contact Deepak Lachhwani, MD, Director, Pediatric Epilepsy Support Group at 216.445.9818.

Email Us

The PESG e-mail is a designated account to offer interaction and networking opportunities. Emails are forwarded and processed by PESG (Pediatric Epilepsy Support Group) staff to Volunteer Parent Ambassadors.

Call Us

PESG voicemail is a dedicated phone line with a confidential voice mail box available for interested families. Messages left on this voice mail box are retrieved on a regular basis by the Volunteer Parent Ambassadors who then return the calls or forward them as appropriate.216.445.9768 / 800.223.2273 x59768 (Toll Free)

Family Directory

Many of our patients' families expressed interest to work with other families of children who have had epilepsy surgery. If you are interested in additional information, please contact:

What is Project COPE?

Collaboration for Outreach and Prevention Education (COPE) for Children with Epilepsy.

The COPE program consists of four sessions geared toward either the parents of children/teens who have epilepsy or the children/teens (ages 12 to 18) themselves.

Participants will learn about the importance of emotional wellness/mental health and how to cope with everyday stressors they may face.

Improving Access to Mental Health Care for Youth with Epilepsy

Despite continued progress in the treatment of epilepsy, the psychosocial outcome in adults is reported as poor, even in patients who reach seizure freedom. Rates of psychopathology are high in patients with epilepsy, ranging from 37 percent to 77 percent in children and adolescents with epilepsy. An analysis of 29 cohorts of patients with epilepsy demonstrated increased risk of suicide compared with the general population.

For more information and to submit your suggestions, contact Tatiana Falcone, MD, 216.444.7459.

Parents of Children or Teens with Epilepsy – You Are Not Alone

Has your epileptic teen ever struggled with, or have you as his or her parent been concerned that your teen may suffer from:

depression or anxiety

problems socializing with peers or low self-esteem

being bullied by classmates because of their epilepsy

Emotional and mental health is an important part of our overall wellness. Unfortunately, because of the fear and stigma our society harbors about mental illness, many of us are uncomfortable dealing with that part of our lives. So, we may overlook warning signs that we or our children are depressed or anxious, with sometimes disastrous consequences.

Additional Resources

These resources can help you and your child learn more about seizures and epilepsy.

Question of the month:

"Our child has done well since surgery and our doctor offered to gradually stop the medication altogether. Is this risky?"

Answer:

The most likely outcome is that your child will have no further seizures. Your doctor will weigh the odds which would favor a successful medication withdrawal and share this information with you.

The following risks are rare, however they should be discussed:

Risk #1: Child may have one of the typical pre-operative seizures. Plan: Restart medication; majority of children become seizure free again with just restarting medication.

Risk #2: Child may have a longer or harder seizure than pre-operative typical seizures. Plan: Emergency care and restart medication.

Risk #3: Seizures may be difficult to stop again. Plan: Your epileptologist will need to guide further management.

Teens with Epilepsy

Being a teenager comes with its own set of challenges, but being a teenager with epilepsy, raises even more questions and anxiety, such as explaining seizure to their friends, concerns about playing sports and driving, or not knowing when the next seizure will occur.

Epilepsy and Driving

Should parents allow and encourage their teen son or daughter to obtain their driver’s license?

Ajay Gupta, MD, Pediatric Epilepsy Specialist: Driving means independence, and ability to have a better quality of academic, social and occupational life. Driving should not only be encouraged, but should always be a goal, whenever possible, after considering all aspects of every teenager's condition. Parents should discuss this with the physician as the child is approaching the drivable age in the state he or she lives to give the best opportunity to plan ahead.

Are there any restrictions or other concerns that should be raised about driving?

Ajay Gupta, MD, Pediatric Epilepsy Specialist: While seizure control is critical for teenager's ability to drive, it is not the only factor in evaluation for driving. Compliance, supervision, and tolerance to antiepileptic medications are important. Any physical, intellectual, behavioral and maturity issues must be taken into account. Laws of each state vary, and meeting the state guidelines and driving standards is another consideration. Value of ongoing follow up and close supervision under a physician is paramount to maintain one's ability to drive and proactively make medication adjustments. Most teenagers with well controlled epilepsy are likely to be able to drive if they can demonstrate compliance to medications.

How should the first conversation (about having epilepsy) be carried?

Tatiana Falcone, MD, Pediatric Epilepsy Psychologist: The first discussion should be very informative and it should include the facts of epilepsy. People are able to cope with situations better when they know what to expect, so it is easier to discuss all the epilepsy facts to help increase awareness and de-stigmatize this disorder.

Are there any special concerns for teenage girls with epilepsy?

Tatiana Falcone, MD, Pediatric Epilepsy Psychologist: Teenage girls might experience changes in their seizure frequency around the time puberty starts, with some girls actually experiencing more seizures before, during or soon after their period.

Can teens with epilepsy have normal intimate relationships?

Tatiana Falcone, MD, Pediatric Epilepsy Psychologist: Of course they can, just making sure their partner is aware about the epilepsy helps build encouragement and support in the relationship.

Epilepsy, Alcohol and Drugs

Are there any particular dangers of drugs and alcohol usage in teens with epilepsy?

Tatiana Falcone, MD, Pediatric Epilepsy Psychologist: It is very dangerous for teenagers with epilepsy to experiment with drugs and alcohol, as these might decrease the seizure threshold and increase the number and duration of the seizures. Using drugs and alcohol also put teenagers in risky situations that could be very dangerous.

How do drugs and alcohol interfere with the antiepileptic medication?

Tatiana Falcone, MD, Pediatric Epilepsy Psychologist: Drugs and Alcohol compete in the liver with the enzymes that metabolize the antiepileptic medication, therefore there is less amount of the necessary circulating antiepileptic medication which can cause an increase in the number of seizures.

Epilepsy, Work and College

Should teens with epilepsy work (part-time jobs)?

Ajay Gupta, MD, Pediatric Epilepsy Specialist: The goal is always to have a good quality of life in social, occupational, and academic spheres. Independence and employment are important issues that must be addressed considering all aspects of epilepsy that ‘specifically apply to each teenage child with epilepsy’. Teens are encouraged to work and drive whenever it is possible. Career choices, types of employment, compliance, follow up, driving, and drug side effects are some of the important factors one should consider while considering employment opportunities.

Are there any career limitations for teens with epilepsy? What opportunities exist for teenagers who have epilepsy as well as other developmental disabilities?

Ajay Gupta, MD, Pediatric Epilepsy Specialist: A teen with well controlled epilepsy, who is compliant with treatment is eligible for most jobs. Certain jobs may have specific limitations for some diseases even if the symptoms are under control, and eligible teens should clarify this before hand. One example is, perhaps, fighter pilots. There are good books and web resources that one can explore to learn more on taking control of one’s epilepsy.

Epilepsy and Depression

How common is depression in teens with epilepsy?

Tatiana Falcone, MD, Pediatric Epilepsy Psychologist: Depression is very frequent in teens with epilepsy, around 26%.

How is depression treated in teens with epilepsy?

Tatiana Falcone, MD, Pediatric Epilepsy Psychologist: There are two choices; if the depression is mild or moderate psychotherapeutic intervention such as Cognitive Behavioral Therapy (CBT) are very effective for the treatment of depression in teens, if the depression is moderate or severe the use of medications such as antidepressants are probably the treatment of choices. The most effective method to treat depression is the combination of the two, CBT and medication. Additionally, the parent’s role is very important, they have to recognize the pattern of behavior change and ask for help (consult to the child and adolescent psychiatrist or psychologist)

Epilepsy and Sleep

Is there any relationship between sleep deprivation and seizures? How much sleep should a teen with epilepsy get?

Ajay Gupta, MD, Pediatric Epilepsy Specialist: This relationship is commonly observed by families, however, is not universal. Generally, sleep deprivation is one of the triggers among multiple other triggers that set the teenager up for more seizures. Other common triggers are fasting, dehydration, flu or other febrile illnesses, unmonitored over the counter or prescription medications, sedation for procedures, stress or physical exhaustion. Sleep hygiene makes sense for all teenagers with or without epilepsy. If a consistent relationship is observed between sleep and seizures, consistent sleep times and duration could help in seizure control. A healthy teenager must sleep for at least 8 hours of uninterrupted sleep at night, and for sure, many may require 9-11 hours of sleep.